Global Resources

The following organizations provide information and resources for patients and families affected by rare diseases in many parts of the world. 

In order to receive the best possible care, it is important to find a doctor who is an expert in treating bone marrow failure diseases. The best place to begin looking is usually a teaching hospital that is affiliated with a medical school.  Ask for their hematology department and if they have a doctor who is an expert in your disease.  If you are having trouble locating a teaching hospital, either contact your country's medical or physician association or a cancer center or association located in your country or region.

Disease Information

Europe/Global

Australia

Austria

Belgium

Canada

Croatia

Denmark

France

Germany

Greece

India

Italy

Netherlands

New Zealand

Poland

Portugal

Scandanavia

Slovenia

Spain

Sweden

United Kingdom

  • Wellchild Families
    • Provide essential practical and emotional support for seriously ill children, young people and those who care for them across the UK to ensure they receive the best possible quality of care.
  • The Aplastic Anemia Trust
    • Dedicated to supporting sufferers of aplastic anaemia and allied disorders.
  • MDS UK Patient Support Group
  • PNH Support
    • PNH patients in England, Wales and Northern Ireland who have formed a community in order to support each other and speak with one voice, providing relevant and reliable information.

Bone Marrow Transplant Information

  • Bone Marrow Donors Worldwide
    • Bone Marrow Donors Worldwide (BMDW) is the continuing effort to collect the HLA phenotypes of volunteer stem cell donors and cord blood units, and is responsible for the co-ordination of their worldwide distribution. Participants are 71 stem cell donor registries from 50 countries, and 48 cord blood banks from 32 countries.
  • World Marrow Donor Association
    • The World Marrow Donor Association (WMDA) fosters international collaboration to facilitate the exchange of high quality haematopoietic stem cells for clinical transplantation worldwide and to promote the interests of donors.
  • National Marrow Donor Program: Be the Match
    • Be The Match® connects patients with their donor match for a life-saving marrow or umbilical cord blood transplant.
  • Canadian Blood and Marrow Transplant Group
    • Multi-disciplinary organization providing leadership and promoting excellence in patient care, research and education in the fields of blood and marrow transplantation (BMT).
  • South Asian Marrow Association of Recruiters (SAMAR)
    • Serves patients diagnosed with leukemia and other fatal blood disorders from the South Asian community (people from India, Afghanistan, Bangladesh, East Africa, Guyana, Nepal, Pakistan, Sri Lanka, West Indies) and other minority groups who are in search of Blood Stem Cell /Marrow donors.